I’ve been thinking a lot about vulnerability lately, especially how it relates to research and clinical work. Boundaries and ethics largely shun vulnerability on the part of professionals, and historically this has been in an attempt to protect those receiving services. Similarly, the term “vulnerable” populations is used frequently to refer to communities and individuals who require special attention when being considered as part of studies or certain treatment modalities with the idea that they are higher risk of harm. And while I completely acknowledge the need for rigorous, careful thought surrounding work with people who are suffering or have less opportunity to speak for themselves, I’ve come to believe that tossing around the phrase “vulnerable” population is a cop-out and is preventing progress.

“Vulnerable” populations are in fact the exact opposite. They show incredible resilience and creativity in their coping with adverse circumstances and lack of resources. Low-income communities have family and friend networks that support and encourage one another, figure out ways to use the finances they have to survive, navigate in a world that has been set up to keep them down. Individuals with mental illness cope in a variety of ways that keep them on this planet even when it feels unbearable and they don’t have access to services that teach them skills. We are so quick to look at deficit, to pick out what is missing, or going wrong, and use that as justification for academic and clinical distance.

We need to come up with a new word, or drastically re-frame this one. Because right now it is so often used as a judgment, a predictor of failed outcomes and lost causes, rather than a statement of empathy or support. What started as a label that was meant to prevent manipulation and harm has morphed into something that is harmful in and of itself. We cannot let our concern for ethical care and research be tampered by stigmas and biases that have loomed over certain populations for generations. In over-protecting people that are assumed to be weak and incapable, we loose out on any chance to develop evidence based interventions and practices, as well as any opportunities for the members of those populations to have a voice, and more than that, direct involvement in decisions regarding services, funding, and care.

Applying the term “vulnerable” to certain populations has more to do with the people that work with them than the members of the communities themselves. Clinicians and researchers might be required to put more effort into their work with populations that face a myriad of challenges that are not easily solved, might have to think outside the box and push ourselves in ways we haven’t before. We, the professionals, are the ones that open ourselves up to vulnerabilities, for we might come under scrutiny for trying new things and empowering individuals that haven’t had much historically. We might have to do more work examining our own internal biases and attempt to look at the world in new ways. We might have to give up some of our academic privilege in order to allow the people we are work with equal chances to participate. We might have to be okay with being uncomfortable with truths are realities drastically different than our own.

We can no longer afford to dismiss research and treatment possibilities under the paternalistic gauze of protect those “most vulnerable.” Ethical, fair, social just work can be done with these populations with the understanding that they have inherent strengths and capabilities that come solely from the fact that they have had to figure out how to survive. Because “vulnerable” populations have become such largely due to systemic injustice and fear on the part of those in power, not because of an intrinsic failing or certain characteristics. We need to work together to develop research and clinical practice that support these communities, involves them, and recognizes their strengths and capabilities. “Vulnerable” populations do not need our pity or protection, they need attention and resources, partnerships with people who are willing to work alongside them to innovate and expand. Vulnerability does not have to be equated with weakness or helplessness any longer.

The first story I ever wrote was in the second grade, entitled Amy and the Tooth. It was the dramatic and detailed adventure of Amy, a girl who shrank down to the size of a peanut and befriended a lost tooth who possessed superhero-like qualities. Together they journeyed through drainpipes, battled rogue nail clippings, and encountered a variety of other bathroom sink horrors.

Now that I’m older (though not any less afraid of what is in my bathroom sink), my storytelling has shifted more towards reality, or at least my perceived reality. This isn’t because I don’t value fiction; in fact, I devour it ravenously (when I’m not drowning in social work texts). But as I push myself more and more to participate in the world, to move beyond patterns my brain has established while depressed and suicidal, telling my story has become a lifeline.

So much of the time I feel like a fish washed up on the beach, gills desperately opening and closing, trying to breath in an environment it wasn’t made for. Writing somehow fills my lungs, anchors me when I otherwise feel disconnected and unsure. It’s almost as if writing about my life makes it real.

Yesterday one of the women at the shelter where I’m working told me about her aunt who had recently passed away. She shared, misty eyed, that from the age of 17 until she died at 96, her aunt had written in a journal every day. Every day. Now, though she is gone, her stories are still here, her words concrete and present-living.

I don’t know how much I’m living right now; too often my thoughts and emotions hijack my brain and take it far away from where my body is breathing and moving. I’m overwhelmed, shrinking into myself. But if I keep writing, continue to tell my story, maybe the journey down the drainpipe won’t feel so frightening. And, for now, my words will do the living for me.

I remember scraping ice off the car windows before school in the winter, my breath clouding in front of me in small, cottony bursts. It was a slow process, and my younger sister would watch from inside as the world shifted from an opaque blindness to bright visibility in jagged streaks. The steady whir of the “de-frost” mechanism coupled with the scratch of the tool was simultaneously shocking and soothing, and even once I’d finished visibility was a patchwork of clear glass edged in ice.

I am beginning to “de-frost” my brain right now, and it is terrifying, and humbling, and full of messiness and struggle and little rushes of joy. It isn’t linear at all; no blinking arrow is pointing me in the direction of blue skies and clarity. It isn’t relieving either; in fact, much of the time things feel tight and strained, like I’ve inhaled and forgotten to exhale.

But I am Awake.

Because all of this is maddeningly simple in some respects: I’ve been afraid to feel. All of the behaviors, all of the attempts-at the core these were reactions to emotional overwhelm, panic at sadness and anxiety that seemed so large in the moment that I couldn’t possibly contain them, that something had been stretched so thin it had to snap.

I’ve known this for a while; one of the first things they teach you in eating disorder treatment is how restricting or purging compensate for discomfort; they numb you, allow you to function in the world without being present.

What I’ve only recently realized, though, is that this fog extends beyond the “scary” emotions, the sadness and anger and fear. I’ve been living without the joy and the wonder too.

Because you can’t pick and choose which feelings you want to extinguish. You can’t put out the flames of sorrow unless you also reduce happiness into a smoldering pile. It’s all part of being human, and I’ve been a ghost of one for many years. Without emotions you’re hushed, in a stagnant and silent place where you can’t grow, where change can never happen.

My intention for this new year is to continue to learn how to be fully Awake. To let my brain de-frost and thaw from the freeze it’s been in for so long, and to be open to whatever feelings come with it, though the process is as haphazard as the scraping of ice-glazed car windows. Because even though I’m still frightened of letting the sorrows tear me apart, I am much more frightened of never allowing the joys to put me back together.

My memories of the past several years are smeared, streaky and ghosted like an underdeveloped Polaroid. They are a part of my story and yet seem foggy and distant, the narrative of another person. It’s almost as if I’m the omniscient storyteller, the voiceover for a character in a movie I can replay in my head. I can watch it over and over, but in a way that is removed, slightly aloof. It is only in violent flashes that I actually recall living through these moments, that the person in the ambulance, the ICU, the treatment center, is me.

Mental illness began for me as a narrowing of my experience, a tightening of the seams, as if a thread was being pulled too hard, gathering all the stitches in one large bundle. Things that used to be spread out, allowed room for breathing, became uncomfortably close and thick. The world itself looked different from this place; the coloring was off, as if the lens I was peering through was filmy and sepia-toned. Things were brown around the edges, dull and old-fashioned, and appeared at a distance. It was like I was always carrying something heavy and awkward, something I couldn’t figure out how to put down.

In college, doctors called it “depression.” In my mid-twenties, it was “eating disorder.” Then it was “anxiety,” then “bipolar.” And, when I still wasn’t better, it became “Borderline.”

This ebb and flow of diagnoses, all very different in symptomatology, has followed me through the duration of my time in the mental health system. My experience with stigma has mirrored this as well, shifting according to my labels.

For it turns out that disclosing suicidal ideation when you are depressed warrants more resources, while revealing thoughts about killing yourself when you are Borderline is attention seeking and manipulative. Continuing to struggle when you are depressed makes you “recurrent;” when you are Borderline, it makes you “unwilling.”

As discussion of mental illness has increased, it has become organized in a hierarchical schema in the public sphere. Much like the bias of the “deserving” and “undeserving” poor, there are diagnoses that are viewed as organic and ones that are perceived as the person’s fault. This is as true in the media as it is in the emergency room or the therapist’s office; while great strides have been made in raising awareness, stigma still exists, especially around personality disorders and chronic suicidality.

I’ve been told that I’m 99.9% lethal to myself. I’ve been told that I’m an “atypical” Borderline patient because I’m so easy to work with. I’ve been told that I’m ungrateful for attempting suicide because there is nothing wrong with my life. In a meeting with my family during a hospitalization, a doctor told my parents they might as well buy my body bag now-with me in the room.

These instances stand out in the otherwise hazy recollection of my past because they are so horrifying. What is worse, though, is how such comments stopped when the label was removed from my chart. Now that I’m back to being “depressed” I am worthy of respectful care. It is as if my humanity is determined by a single word, or the absence of it.

We wonder why people die by suicide, and in the midst of the complex mess of a problem one thing stands out: silence. Is it any wonder that so many are afraid to talk about mental illness when it is so misunderstood? When seeking treatment comes with the burden of stigma and shame?

I purposely talk about my past and present struggles with mental illness with the hope that doing so will influence change. But I still feel a rise of fear when I put words like Borderline out into the world. Most of the time, I try to explain what I’ve gone through without the labels, for these small words that somehow hold such power do nothing to actually capture the reality of experience. And the reality of my experience has come down to moments.

Moments are tricky things to catch. They dart about like tiny fish weaving in and out of kelp forests on the murky ocean floor. If you look at the right time, you can glimpse the silver flash of sunbeams on scales or the flurry of tail-brushed sediment as it rises. It’s more likely, though, when the water is especially deep and dark, that you miss the movement altogether, that what you see is the vast dimness spread before you rather than the brief bursts of activity and light.

It’s so difficult, then, to do what is necessary and helpful in the moment, for when it is most vital, it can seem impossible to recognize it as a moment. If you can’t separate out one moment from the next, if time seems to blend together in a mess of blackness, then reaching out and grabbing the flashlight takes an unbelievable act of courage and strength. And then you must turn it on.

It is almost as if you have to go backwards. You can only see the moments after you turn the light on them, after you know to squint your eyes and wait patiently for the fish to emerge, even for a second, from the swirling seaweed. To do the hard thing in the moment, you have to leap and act even though it feels like you will have to act forever, that it won’t do any good because this doesn’t feel like a moment at all but a lifetime.

It’s standing up and moving one foot in front of another, forcing your legs to follow a path you can’t see, making your brain discount the panic and fear and total darkness that it’s registering and go into action without tangible reason, without any light or guidance at all. Moving when you can’t see what’s ahead of you; that’s an incredible act of bravery.

And so-moments. Because focusing on them is the source of hope when the world narrows, the thread tightens. And shining the light on these moments and how they feel, beyond labels, above single words, is the only way to expand the minds of people who have never experienced such things, to break the silence.

I think the act of living has always been a story for me. I can’t see the ocean without words cresting in my mind along with the tide, can’t feel the fur of my cats without adjectives coating my tongue. Words are the pictures, the taste, the meaning in everything.

And maybe this is why, at first, depression was so startlingly hard to bare; it enveloped all the words. Storytelling takes energy, vigor, light; without it, words dry up somewhere inside you without ever reaching the surface.

And perhaps this is why we still struggle so much with the concept of mental illness. If you have no language to describe what is going on within you, there is no way to communicate your pain to someone else. Words make things real. If the very disease that is gripping you removes them, what is left?

I remember an evening in the Emergency Room, checking in at the registration desk. I was crying, and when asked my reason for the visit, couldn’t think of anything to say. The receptionist kindly said, “I see; you’re sad.”

And that’s just it; depression is not sadness. I’m not sure how to describe it beyond that-what it’s not. But in some ways I’ve grown to see that as a gift.

One of the reasons I’m alive today is because someone believed in my light, saw the glimmer of my story even when my words had long been dormant. This person showed me how to be in this world in all the ways that depression is not.

She showed me it is possible to get out of bed on mornings when panic clogs your throat and it feels like all the awful possibilities are closing in on you. She showed me it is possible to dance in an emptying auditorium just because, for a moment, you feel giddy with joy. She showed me that you don’t have to settle for the status quo, that it is possible to innovate with fervent empathy. She showed me, through her own willingness, what it means to truly be yourself-something I had lost in hospital rooms and prescription bottles, and probably long before.

Depression is not dancing, not words. It is not connection, not light, not life. It chips away at who you are, piece by piece, like a strong wave pounding on a rock, until you are a grain of sand lost amidst millions of other grains. What a gift I have been given, to know that what it is not can prove a daily guide. That my story can continue through the pounding, even when words are harder to find in the swells. And what a gift that she, by shining her own blazing light, gave me back my own light, my own story.

I can feel it lately, though I don’t know how to describe it other than a deep internal rumbling, almost like hunger but thicker and complicated by a stew of emotions.

It started during my first graduate school class, when my professor told us that silence condones, that our voices as social workers are one of the most powerful tools in our possession, that words are a vehicle towards change.

It continued as my eyes were opened to the unearned privilege I’ve carried my entire life with complete unawareness, unawareness born because of that very privilege. It strengthened as I learned about our American system and how it is oppressive at it’s very core, how for the first 30 years of my life I have been quietly and passively walking on soil that is stained and stolen.

It grew louder, more ferocious, when the majority of the academic community which so loudly touted social justice values went mute surrounding mental illness issues. It writhed with loneliness and fear when I was told not to speak of my own struggles, not to share my personal story, not to be who I am.

And it’s there now, this rumbling, as I write these words. I’ve cried over it, denied it, tried to throw it away. I don’t want the heaviness of caring so much.

But I do.

So I’m releasing that rumbling, turning it into a thunder clap, a roar. I don’t want to be a part of a world where so much is broken, so many differences are ostracized and demonized and oppressed. I don’t know what it’s like to be black, to be homeless, to be Native American, and I hope to continue in my learning about allieship, about ways in which I can be a part of empowering those communities, raising those valuable voices above the din of privilege.

I do know what it’s like to have a mental illness. And I’m finished walking the tightrope between silent safety and outright openness. In a year and a half I am going to be a social worker who has attempted suicide, has scars from self-harm, has been in a psychiatric hospital multiple times. And I’m going to be a damn good one.

And I’m allowing that rumble to guide me, that passion to drive me towards working for change. I’ve always believed in the power of storytelling, that words matter. Now my words will have rumbling behind them.

The hardness can come from the outside, and I am lucky enough to not know too much about that. The hardness from within, though, I know on a deep level. It is and has been a part of my life for as long as I can remember. I’m still not certain of what to call it-depression, anxiety, eating disorder, self harm-all these Big Words that characterize symptoms I’ve had but hardly sum up the struggle of extreme sensitivity and intense emotions. I am sure that it has to do with who I am at my core, how my Brain interprets things-these things are always with me.

I’m also sure, though, that the hardness is the beauty.

There are times when I am so full of hardness that I sink-when I get so angry, so sad, so afraid, that my Brain is the way it is. I don’t want to feel so deeply, I don’t want to think about everything to the extent that I can’t sleep, I don’t want to be someone that other people experience as “too much.” It’s a slow kind of drowning, where I can look up and see the bubbles from my nose rising towards the water’s surface and am aware of every breath I can’t take.

But there moments when I resurface, when I am aware and grateful for what those intense emotions allow me to do-care fiercely about those around me, have empathy for people in pain, work fervently and passionately on things that I value. It’s why I am moved to tears by poetry, why I laugh until I almost wet myself when I watch cat videos on YouTube, why I put songs that resonate on repeat for days. I feel everything all the way

One of my favorite books is To Kill a Mockingbird; my copy is worn and coffee stained from the amount of times I’ve read it, my cats are named after the two main characters, and I have a quote from the story tattooed on my wrist: begin anyway.

I love those two words paired together because they conjure up hope and newness with the acknowledgment of fear and hesitation. To begin anyway is to dive purposely into the beauty and the hardness. It is to continue to fight when everything seems pointless and I long for a different Brain. It is to hold those moments when I experience intense joy up to the light and say thank you for my Brain.

And, on this Worldwide Suicide Prevention Day, it is to be grateful that my Brain is conscious, that I am typing these words and allowing the flow of joy and sadness to rise and fall within me. Every moment is the opportunity to begin anyway-thank God I am here to do it.

I’ve been thinking a lot lately about the word recover. We talk about recovery in terms of physical illness and injury; you can recover from cancer, a broken arm, a sunburn. These all have fixed endpoints, clear indicators of when healing has occurred.

Then there is recovery in the sense that you regain something that you’ve lost, like recovering a document after your computer crashes. This, too, is specific, tangible.

With mental illness, though, recovery seems murky, nebulous. I keep hoping there is some plateau I will reach when everything will even out and things will feel firm and easy. The more I search for that, however, the less I believe that it exists.

I’ve changed behaviors related to my illness, certainly, and I’ve not been in the hospital in months. These are markers, I guess, of being in a different space. But emotionally, I still feel the tremors of despair and sadness and anxiety. Perhaps this is what recovering is? Responding to the big, painful feelings in a different way? Not being rid of them, but accepting that they will always be present, learning to allow room for them rather than running?

It’s not what I had initially hoped for. When I made the choice, about a year ago, to shift my focus to living, I did it with the mindset that I might, someday, feel differently. More and more, though, I believe that my life will always be a series of earthquakes, that seismic emotions will constantly brew under the surface. I think I’ve just gotten better at functioning with them present-and am still constantly working at improving even more.

I’m not writing this to convey hopelessness, and it might be true for some people with mental illness that they reach a place which is entirely new, a state of “being recovered”. But for me, this is a chronic part of my life, and though not who I am, very much connected to it. And sometimes I wonder that, once you have almost died, once you have gone to such extremes, once you have felt dehumanized by a system and lost completely, if you ever totally come back.

It may just be where my head is at right now; exhausted, scared about the future, overwhelmed by a crush of different feelings. I think there is a little sense of peace, though, in acknowledging that things might always be rocky for me. In that imperfection there is space to stretch and grow, to make mistakes and learn from them, even if at times it’s painful and slow.

Recovered means I’m stagnant, a marble statue representing health and wholeness in a Psychiatric textbook. Recovery means I get to keep living every day in my humanness, moving forwards and backwards as I try to figure out who I am, what I want, and how I can embrace my sensitivity and intensity. It is living with the emotional earthquakes, not shutting down or self-destructing because of them-and maybe even, sometimes, causing the rest of the world to tremble too…for it’s the ground shifting beneath us that makes us stop to re-evaluate, try something new-pushes us to soar.

“I have everything I need” echoes through the lacey green forest, the trees and the ferns, the lichen and moss; rain water, sunlight, space to spread, no want of cable, BMWs, designer clothes-rooted and firm, yet constantly reaching upward. A balance of steadiness and flexibility, a promise of taking only what is required and giving back what is possible.

Why can it be so hard for us to realize we have what we need, to be grateful for roofs and meals and instead to want more and more? Why are we sometimes to determined to bypass the simple joys, the basic necessities?

It isn’t that we have brains that are capable of thought, and the forest system does not. Human children have neural networks, and in my experience working with them I have witnessed great capacity for the appreciation of small things, for excitement and curiosity in details with no need to expand to bigger or better.

It took me nearly dying, but I have started trying to stop each day and acknowledge that I have air, water, food, shelter, loving family and friends; I don’t want for anything. Of course there are things I still wish I had (put me in a bookstore and it is nearly impossible for me to leave without something), but I wish for them differently, with the knowledge that I am lucky without them and don’t NEED anything.

With so many people in this world who do, it’s time to let the forest be an example. Take what you TRULY need, give back what you can, and be grateful when you have your basics met and wants beyond.